Topic: Diagnosed with IDC late afternoon on 7/26/2017

Forum:
Just Diagnosed — Discuss next steps, options, and resources.

The radiologist called with the results of my breast biopsy in the late afternoon on 7/26/2017. I have IDC. She biopsied one suspicious lymph node, and called me yesterday to say there were no cancer calls in that lymph node.

I am in Texas, two hours from Houston, and even though my Medicare advantage plan does not cover MD Anderson, I will be going there for treatment. I have an appointment with a breast surgeon this coming Wednesday morning. Hopefully the surgery will be soon after. Thankfully I just paid off all my credit card bills recently.

I am not as concerned about my cancer as I am about my adult children coping with my new diagnoses. Their father, my late husband, died of a rare bone cancer when he was 34. That was in 1983. I HATE that my kids have to go through this again with me.

I think I am still a bit in shock about this diagnoses. There is a HUGE history of colon cancer in my family and I always thought that if I got cancer, if would be colon cancer. Now it appears I am the first in the family with breast cancer. I am 67, tired and worried about money.

so sorry that you find yourself here with a BC diagnosis. It's the club that nobody wants to join, but the best people are in it. I know that the C word is very scary, but BC is very treatable. The 5 year survival rate for BC is 98%. There are lots of people here that have completed treatment successfully. Do you have any other details about your diagnosis (e.g. Grade, hormone status, etc)? It can help other folks on these boards to answer your questions more effectively if that is known.

Some other folks may disagree with me, but if you have "garden variety" breast cancer like I do, you can be treated just as well at a smaller, local hospital. I live in the Boston area, and I did not go straight to Dana Farber, I was treated at Mt. Auburn. They have a wonderful breast center there and it was much less hectic than going to the big cancer hospital. It wouldn't have cost me any more to go to Dana Farber (except for parking, lol) so that wasn't a factor in my decision at all. You don't want to bankrupt yourself if it's not needed. Plus, if you need radiation treatment, a two hour drive every day for that will wear you out

The initial stage when you first hear, is the hardest. I am your age and have kids in their 20's and although one went to the first appointment with me, and stayed in the hospital with me after the first of two mastectomies, they have not been terribly affected by going through this with me.

Right now you don't have much information on the specifics of your diagnosis. Chemo is not a foregone conclusion, not at all, nor is radiation. You will get pathology results, and hopefully an Oncotype score or other genomic test, and once you make a decision on treatment it will be easier.

As for using a smaller hospital, don't do it. The other poster mentioned Mt. Auburn. That hospital had a pathology result that was wrong, that caused me so much trouble and stress. They had me as HER2+. I was headed for Herceptin and chemo. Thank God I switched over to Dana Farber, and, later, MGH.

There must be a way for you to get coverage at Anderson. I have managed to get coverage out of network for my kids. Call insurance and talk to a supervisor, tell them that Anderson is the number one cancer center. Failing that, see if you can keep an oncologist at Anderson and farm things out to another covered hospital. For instance, you could talk to the oncologist at Anderson about surgery, but have it done elsewhere, and then have the pathology specimens transferred to Anderson for testing-? At the very least, use them for a second opinion (which also involves having pathology tests done).

i was just diagnosed on 7/13. still waiting on clinical staging, let alone a pathological one. i don't have much to add to this conversation, as i'm just a "bad boob noob" ;) but i hope for you peace, understanding and love. i've already found so many new sisters here, and i hope you will too.

i was just diagnosed on 7/13. still waiting on clinical staging, let alone a pathological one. i don't have much to add to this conversation, as i'm just a "bad boob noob" ;) but i hope for you peace, understanding and love. i've already found so many new sisters here, and i hope you will too.

I am a no body, I would agree with sjacobs that a smaller hospital may be a better bet. You can go ahead and get a 2nd opinion from MD Anderson and then decide which might be better for you. My MO is associated with a local hospital, and I can not imagine having to go to LA (about 2-3 hours away). I'm very pleased with the competent treatment I've received, and think I may have received better care than some folks at the big cancer hospitals.

I am so sorry you've had to join our club. I may be in the minority, but I also would encourage you to just think about what you might be able to have done locally. I worked with a BS locally, and then had to fly out of town for my mri (no local imaging center routinely performed and read breast mri, which is critical for accuracy). I had a second opinion on my pathology from an expert (out of network) and I had a consult at Duke Cancer Center breast clinic (how awesome to meet with several different specialists in one day), and then returned to carry out the plan with my local team. My insurance was willing to cover the additional out of network consults, as my treatment plan was carried out locally. Putting yourself in the position to have to pay off large amounts of health care debt when you don't necessarily have to, will certainly add stress for you after you finish your treatment; just at the time you should be focusing on healing and rebuilding. It is a lot to consider right now, while you're still getting all of your information. But you don't necessarily have to make your mind up this instant. Take a few days and collect your thoughts as you collect more intel. We're here to help you! ((hugs))

Another option that may be available to you is to get your surgery done at MD Anderson, and your chemotherapy/radiation treatments done at a local hospital close to home. That is what I am doing. I'm getting my surgery at Dana Farber. With chemotherapy (if you even need it) it can really be done anywhere because there is no advanced machinery involved. Just have your doctor order what you need and send the order to that hospital which may also be covered by your insurance, and you will also save money.

Oh, I am right with you on this! I posted under "triple negative" forum and won't go into the details. I always thought I would get uterine cancer because my mom died at 52 of it after years of suffering. Also, because I had my own problems in that area, and I take after her in other medical areas. However, I hit the lotto and got my breast genes from my dad's side.. (9th occurance among 6 people). I initially was diagnosed with hyperplasia early this year at a regional cancer center. (We live in a fairly large city, you'd think that would be fine). Also my needle biopsy disagreed with my lumpectomy biopsy so I got a second opinion from a well known hospital 5 hours away, where some of my family were treated (we don't have BRCA genes) When I say well-known, I mean a "movie star" famous facility. That facility not only found DCIS, they found invasive IDC. It was super small, very early stage, but high grade (fast growing). They are recommending double mx and the local docs here disagree. The subsequent MRI/Bone Scan and CT scan show various problems but do not agree with each other. It feels like no one is on the same page, including the pathology labs and the radiologists! (I'm guessing it is because it is so small,so early). If I hadn't already made a decision, I might even get a third opinion.

However, because the chance of recurrence seems so high in my family, I am going to do the double mx surgery and reconstruction (assuming my insurance approves... apparently they also disagree that double mx is needed... probably because the hospital and reconstruction surgeon are in a different state and are movie-star related). Luckily I do have good insurance and it will probably be resolved. If you are in doubt at all, get a second opinion out of town. Then there is no croney-ism, no reason for the doctors to agree if, in fact, they disagree. It certainly seems like you could find some hospital/doctor that is in your plan. I am 62. There are lots of cancers in both sides of family but of all different kinds. I knew cancer would be my downfall, just didn't expect breast cancer to come to me through my father's genes (he is 90 and doesn't have it). None of us is BRCA +. I am the only one found to be triple negative.

Oh, I am right with you on this! I posted under "triple negative" forum and won't go into the details. I always thought I would get uterine cancer because my mom died at 52 of it after years of suffering. Also, because I had my own problems in that area, and I take after her in other medical areas. However, I hit the lotto and got my breast genes from my dad's side.. (9th occurence among 6 people). I initially was diagnosed with atypical ductal hyperplasia early this year at a regional cancer center. (We live in a fairly large city, you'd think that would be fine). Also my needle biopsy disagreed with my lumpectomy biopsy so I got a second opinion from a well known hospital 5 hours away, where some of my family were treated (we don't have BRCA genes). When I say well-known, I mean a "movie star" famous facility. That facility not only found DCIS, they found invasive IDC. It was super small, very early stage, but high grade (fast growing). They are recommending double mx and the local docs here disagree. The subsequent MRI/Bone Scan and CT scan show various problems but do not agree with each other. It feels like no one is on the same page, including the pathology labs and the radiologists! (I'm guessing it is because it is so small,so early). If I hadn't already made a decision, I might even get a third opinion.

However, because the chance of recurrence seems so high in my family, I am going to do the double mx surgery and reconstruction (assuming my insurance approves... apparently they also disagree that double mx is needed... probably because the hospital and reconstruction surgeon are in a different state and are movie-star related). Luckily I do have good insurance and it will probably be resolved. If you are in doubt at all, get a second opinion out of town. Then there is no croney-ism, no reason for the doctors to agree if, in fact, they disagree. It certainly seems like you could find some hospital/doctor that is in your plan. I will do the main surgery and reconstructive surgery at the "famous" hospital, but will have the "fills" done locally. And if chemo is determined to be necessary, I will have that done locally.

I am 62. There are lots of cancers in both sides of family but of all different kinds. I knew cancer would be my downfall, just didn't expect breast cancer to come to me through my father's genes (he is 90 and doesn't have it). None of us is BRCA +. I am the only one found to be triple negative.

Good luck to us!

Mary Mac

PS: Colon cancer, prostate cancer, ovarian cancer and breast cancer are supposedly related. We have several prostate cancers, 1 colon cancer, one brain cancer, one lung cancer, one pancreatic cancer, and 9 occurences of breast cancer. AND even though I did the extended genetic panel test, I have no genetically known markers.

I would definitely opt for treatment locally and in network. The copay's alone can add up really quickly. There were some weeks when I was at the doctor's office three times!

I'm a big fan of second opinions, though. My care has been at local community hospitals, but one is associated with MD Anderson and the other with Johns Hopkins. I find it reassuring to hear from several sources.

IAAN, Sorry you are going through this. I empathize with you and your concerns. I am single, self-employed and have 2 grown children. My DD found out about my DX while I was at her house on the phone making an appt for a Diagnostic mammo. I had to tell my DS when he got back from his honeymoon, that he finally had a few yrs after marrying. That was hard, since he had no clue. But, they supported me through it all and that helped me immensely. I don't think it's easy to process, no matter what age they are. It's difficult to deny the protective mode we feel when it comes to our children. I somehow felt a sense of guilt like I had let them down and was causing them hurt. But, this is about you now. As far as the financial burdens, talk to the social worker at your medical facility if you need financial help. There are many resources for grants, etc. if you qualify. The American Cancer Society is also a great resource for rides to appts, wigs, cleaning house, etc. PM me anytime. I am Northwest of Houston close to Austin. Best wishes.

I just wanted to let you know that I'm in Houston and I chose not to go to MDA. I went to Houston Methodist West (because I live in Katy so the hospital/facility/doctors are about 10mins away from my house and 15-20 mins from my office) so my medical team (except for MO) are all in Methodist West. My MO is with Texas Oncology, also in Katy. I love her (my MO) - the facility, maybe not so much, but in general, its OK. Just thought you should know there are other very good options than just MDA in Houston. Try to stay within network ... I think that with all that we have to go through, it makes it that much easier to not have to worry too much about medical bills ...

Greetings from Galway, Ireland. I know it's such a shock when you hear the word 'cancer' and evertyhing seems to be havvening so fast and out of one's control. I was diagnosed in May 17 and start my chemo next week. I felt that as I was in Ireland my treatment i.e my chemo regime might be different to the USA.( I worked in Calif in the 90's as an RN in private and public hospitals for a brief period).I googled and googled and it looks like the treatments for the various breast cancers are pretty standard. I have triple negative - Invasive Ductal Cancer, which is quite aggressive. I had surgery, this is followed by AC 4 doses every 2 weeks, followed by Taxol weekly fro 12 weeks. Reading some of the posts, I stand to be corrected but it has reassured me that the treatment is fairly standard regardless. I do hope you make the right decisions and not get into unnecessary debt if there is no need. I wish you every success with your treatment and my prayers are for us all on our journey. Keep us posted and God Bless.Galway2017

Hi. I was diagnosed on June 20, 2017 and had my partial mastectomy this week 8/8/17. I totally believe that choosing a smaller " satellite suburban " office rather than one off the big centers is the reason I'm already starting my journey rather than sitting waiting for a plan. I' m 45 minutes outside of Philadelphia,PA so I had a lot of top choices but I wanted to be able to do appointments and treatments myself and not need someone or if I did need help I didn't want to be a burden. So I started searching doctors not facilities and I found that Less than 5 minutes from my home one of the top 10 breast surgeons in the northeast held appointments once a week and so did several of the city top oncologists.

I also feel like the nurses at the facilities already know me and we can talk about local stuff because we both live and work in the community which is nice to have something to bond or relate to with your caregivers.

I wish you all the best. I'm still very new to this and don't know what's next but I've learn so much from these posts

I was diagnosed with Triple Negative IDC 4cm tumor, BRCA 1+ Grade 3 on the morning of July 27 2017. I missed the call on July 26th. I was 41 weeks pregnant and 29 years old I'm going to come back here to post when I get my pCR after neoadjuvant chemo and you should too!